My birthdays bring fresh hope every year
As I age in the face of CF statistics, I'm experiencing layers of gratitude
I just celebrated another year on this planet in December. My birthday has become a time of deep reflection as I age with cystic fibrosis (CF), sprinkling in an added layer of life with a double-lung transplant. Now I’ve turned 38; I’m growing older. I don’t have gray hair yet, but I do have wrinkles and age spots.
When I saw my dermatologist, he danced around what the spots on my skin are called. I knew he was trying to find a delicate way to say they’re typically referred to as age spots. However weird this revelation may sound, I teared up when he left the room. I’m old enough to have age spots? That’s something to celebrate!
So yes, I’m still here and nearing the 40-year mark. To me, it’s simply a middle finger to statistics. I talk a lot about beating the odds because mainstream stats haven’t had many encouraging things to say about living with CF, let alone a transplant. But I refuse to subscribe to the narrative that just because I live with these conditions, all hope for the future is lost.
On the contrary, I accumulate more hope with each passing year. My hope largely stems from my faith in God, and that’s completely changed my perspective about life. But there’s also a new neural pathway in my brain saying that I’m good, my hypervigilance can take a break, and I can relax knowing my lungs are healthy. Whew. I’m daring to say that it’s true.
Gratitude for each year
Sometimes I still pinch myself. I often say out loud as my eyes sweat, “How is this my life?” I remember more times than I can count how hard my life was before my transplant. I was constantly exhausted, struggling to breathe, and stuck in survival mode. I didn’t have a concept of what breathing without congestion or wheezing would be like, let alone all that I’d be able to do. I held on to hope for better days. And now my life is better than I could’ve ever imagined.
On my birthday this year, I wrote down all that I was able to do over the past 12 months. The biggest event was that I got married in May to my best friend and love of my life. There’s something special about proving everyone wrong when I accomplish these milestones in life, which most said I wouldn’t get to do.
Another major accomplishment was traveling more this year. Before, traveling lightly was never in my vocabulary. Actually, who am I kidding? I still don’t travel lightly. But I do travel a lot more lightly than I once did. It’s incredible how heavy an oxygen concentrator, airway clearance device, nebulizer, and medications are, plus the added layer of not being able to breathe well. Huffing and puffing while navigating through the airport, dragging all that baggage, was a nightmare. The year before transplant, in fact, I had a wheelchair escort.
Man, my tacrolimus-treated brain bounces all over. Forgive me.
But for real, living life while knowing the fragility of it all is a gift. I know what it’s like to be close to death and fighting for my life. I also know what it’s like to thrive and live in a completely different way that’s counterintuitive to what statistics say about me and my capabilities. Hope remains strong within me, regardless of what I’ll face.
It’s an incredible time to be alive; I have hope for my future. It’s radical to say that my life just keeps getting better and my gratitude list grows longer all the time!
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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